Dream Planning and Future Opportunities for Special Needs

I grew up in a family of people who pray. While those prayers were rooted in deep faith and accompanied with a history of tradition and church, the premise of the prayers were to let our thoughts be known–to speak our gratitude out loud and to unleash the deepest desires of our heart and give them wings; transform them from hidden thoughts to something bigger–spoken words empowered with the belief that what we asked could be granted. I remember countless prayers for babies, my grandpa adding “our grandchild on the way” to the line-up of other grandkids’ names in his prayers before they were even born. Intentions for these little lives were spoken out loud: “Please give them health, protect them, let them grow up to be kind,” and later continued into more specific prayers: “Let her find the right college, please help him do well on his test, keep him safe on this trip.”

I believe in the power of making our wishes known and unleashing dreams into spoken words. In parenting, it’s often what saves us from worrying too much but also what fuels us for the future and excites us for what’s possible. We talk about dreams as our children pull stethoscopes from their plastic doctor kits and we hint, “Maybe you’ll be a doctor someday!” Or when they swaddle their dolls and we tell them, “You’re going to make the best mama.”

When Nella was born, it took me a little while to figure out what those prayers look like–how to speak dreams out loud. I’d watch her gently nestle babies into her arms, patting them softly, and go to say, “You’re going to make the best mama someday” but stop myself, knowing it was highly unlikely.

I believe in dreaming big and “nothing’s impossible,” but I also want to be responsibly realistic. Sometimes that’s hard with Down syndrome when we understand legitimate limitations that will impact her future and yet are also living in a time when people with Down syndrome are accomplishing things they never have before.

And so how do we dream? How do we speak intentions out loud, get excited about opportunities that will be available to her and follow a path toward real goals?

I’ve found three things that help me:

1. I focus on this: I want Nella to be happy, to contribute and to feel fulfilled in life. Period.And what makes her happy and how she contributes or feels fulfilled might be different than what I think should fulfill her and make her happy. Brett used to love the possibility that Nella would live with us forever, and I frequently remind him, “She probably isn’t going to want to live with us.” She might want to live with other people who have Down syndrome. She might want to live alone. All I know is that whatever makes her happy and whatever she dreams of doing, we will work hard to support her in achieving that.

2. Knowledge is power.There didn’t used to be very many options for the future. In fact institution and living at home were about it fifty years ago. But there are so many different ways to dream about the future for our kids now, thanks to new programs, opportunities and creative minds that are forging new paths. We know now that college is an option from working with Ruby’s Rainbow and that there are nearly 250 different college programs around the country for people with intellectual disabilities.

And there are new options. Daymark Living is one of them–an entire community dedicated to helping the developmentally disabled thrive.

Daymark Living will be breaking ground soon in Waxahachie, Texas–a growing town (near Dallas/Ft. Worth) of 40,000 people that offers a historic walkable downtown, a welcoming community and something critical to people with disabilities–employment opportunities. And while Daymark Living might not be a “forever” option for many families, it can be a great fit for a specific time period and a perfect “away from home” college experience.

Residents will increase independence while living at Daymark while having a huge support group of friends and staff along the journey. Daymark’s beautiful homes come with numerous amenities from daily resident programming and on-site healthcare to transportation into town, social events, pools, fire pits and monitored fitness rooms–all to increase quality of life and encourage greater independence and meaningful relationships.

The Daymark Living dream started from a dad who has a son with Down syndrome and, like us, believes in the power of saying his dreams out loud. (I’m so glad he did)

Thinking about Nella’s future can sometimes be daunting, but knowing new opportunities like Daymark Living exist and clicking through their website? It gives me so much peace and direction toward realistic possibilities.

Which brings me to my third thing that helps me:

3. Plan for Greatness.When we think about the future of our kids and plan for college and opportunities, we plan for ALL of them. Nella’s future isn’t exempt in that big dream pile for our kids. They will each find ways to fly away from the nest and experience the beauty the world offers, and we want to support all of them in their dreams.

With that said, I have a little dream for Nella’s future. It might not be what she wants, and if that’s the case, we’ll follow her lead, but I believe in saying these dreams out loud. If just for me. I’ll throw it into the universe, like my grandpa did in those long prayers he made every single morning, pouring out the deepest desires of his heart for the grand kids he loved.

I dream of our house in the mountains–it’s small and charming with ivy crawling up the face of it, and there’s a red front door, but my favorite thing about it is the little mother-in-law house behind it, far enough away that it has its own space. That’s Nella’s house. She’s close enough to us that she can borrow a cup of sugar or ask for some help if she needs it, but she runs that precious space on her own…with her husband, of course. There are wildflowers in their front yard–Black-eyed Susans by the hundreds, and they don’t mind when I run over to cut some for my vases before dinner parties. I invite them to all my dinner parties and love when they come, but most of the time they are having fun with their own friends–and that makes me happy. I own a children’s bookstore in our little downtown, and Nella works there part time. She runs story hour every weekday at 10 a.m. for all the little kids, and they love to hear her read stories but mostly love the hugs she gives them after. She has another part time job–with benefits–in town and loves her work friends–and being a beloved aunt to her nieces and nephews. We’ve watched our kids grow up and follow their passions, and we’ve supported Nella as she’s tried new things, went to school, lived on her own and eventually fell in love and moved in to the little house out back. She is surrounded by love and people who will help support her when we are gone. We have worked hard, experienced challenges, overcome them together and learned a lot over the years. But we are here…and she is happy. And all those who know her are better for it.

I don’t know what the future holds, but I am grateful for more opportunities. Thank you Daymark Living for being one more star in the sky for our dreamers. If you are a parent who’s dreaming of more for your child, follow Daymark Living’s growth and feel free to inquire about the possibilities they hold.

I always have your beautiful Nella on my heart. I came upon your blog 3 years ago by chance and have been following you since then. I am a believer. I will join you in your heartfelt intentional prayer for Nella and your family.

Nella might not get to be a Mom one day, but she’ll more than likely be an auntie, and that is a dream in itself. I am almost 33, single, and have dreamed of nothing more than having babies. It physically hurts sometimes. But as I get older, I have to start thinking that maybe being a Mom isn’t in the cards for me. However, I became an aunt in 2014, and it honestly is the best thing. As much as I still want my own children, and am working towards that goal, being a favorite auntie, as I’m sure Nella will be, is so so amazing in it’s own way.

My 37 year old brother has DS. He lives at home with my parents, both in their mid
Seventies. I am his only surviving sibling. I will be his guardian when one or the other passes. We will then be eligible
For help from the state so
he can go live in a group home. He is not eligible now. His iq is low, and I think that is more of a determiner of quality of life. He has access to good healthcare thanks to a baseball player named Pujols who has a foundation in STL for Downs. It’s not a bed of roses for the parents or the sibs who are looked on to provide care after parents pass. No one I know has 3500 a month for rent. His SSI is about 800 a month. May Nellas future be brighter.

Thank you for sharing this. Each family has dreams-some for friends and parties, some for marriages and college and some, just to have assistance with their bills and medical expenses. May your family have joy, peace and wisdom for the future.

I haven’t allowed myself to dream that big yet. Judah is about to be 2 and just welcomed a new brother this week. With two brothers now, and 5 local cousins I have gotten as far as picturing him getting tons of high 5’s down his high school hallway by friends and family who love his style the way we do. The dreams are important. Thanks for helping me push mine to look as lovely as yours Kelle.

I love this post. I think the three things you share are a universal for all children; maybe that is what I love the most. We might all be unique, but I think at the very base of each of us are some of the very same desires for acceptance and love. The dream you have for Nella brought me to tears. Thank you for writing, teaching and sharing your life and heart with all of us. We are better for it.

I could not view any of the pictures on your 2 most recent posts. I love your writing and thoroughly enjoy your pictures of your 3 beautiful kids. Am I doing something wrong that the pictures will not display?

I had a similar dream for my sweet Layee Grace. I took the old train depot in our little rural town and renovated it. Kept the history….. the old brick and hardwood and crowne molding and all of the stories those walls knew…but added a new shiny espresso machine and coffee pots and light fixtures. Laynee went with me often and she loved the sound of her feet on that hardwood. My customers came for coffee with hopes of getting one of her famed low muscle tone hugs and a smile that lit up their whole day. She and I were going to work there together forever, someday it would be hers. Someday she would be able to wipe tables and make smoothies and lattes and breves. Customers would keep coming for the shot of Laynee love. I was living our dream, paving the way to success for my girl, until heaven came and swept her away long before the dream was complete. At the time I thought maybe I was doing it too early. She was only 2 and hardly ready to work in a coffee shop but I nabbed that old depot when I had a chance, not knowing that we only had a little time. Those old walls tell lots of stories. Of old time travelers and one little girl who danced on the hearts of many. I hope you make your dream come true. That you and Nella can work together in your book store until you’re old.

love love love your dreamer heart. you are amazing Kelle. no doubt your kids are going to be able to achieve anything and all that they desire with parents who love and believe in them so incredibly well. also not sure why but the pics on your blog aren’t showing up for me. I checked multiple times today and it’s not showing. I absolutely adore your pictures. thank you for sharing yourself so beautifully all the time.

Tears of happiness welled in my eyes after reading this beautiful reflection. I am a special education teacher and my driving force behind every lesson taught is for each one of my students to contribute to our community and live a life of fulfillment. Your words were beautifully spoken. Many do not realize that options for special needs individuals were so limited. Like your community, I live in a city (Tulsa) that offers many job and independent living choices for these individuals. I am very grateful to all of the advocates from yesterday and today that have created so many opportunities for the special needs community.

What a beautiful post! I also was brought to tears as I imagined your dream for sweet Nella and picturing her reading to kids in your book store.

I am a special education teacher and I taught at GMU in the LIFE program (a program for young adults with disabilities who live and work on campus). So many of those young people I taught have gone on to get married and live on their own. I don’t work there anymore but I still get hit up by all of my old students on social media!! They have also formed lifelong friendships with one another. Dreams do come true. Imagine the possibilities! <– my life motto 🙂

In the context of all the down syndrome articles you are doing this month, which i really really love, all the awareness, the times you let us close to your dreams for Nella, let others dream for their kids…such an awesome change you bring. I wanted to request you to when you have a chance please talk about their speech- like i notice it is harder for me to understand them, so is there any light you can shed in that area, or no way to understand without being close to them and hearing them regularly?

I love your dream for Nella. My second child Dara has DS and is 4. When he was born I dreamed big right away! I was so lucky to have had quite a few people already in my life who had downs syndrome and they would fill you with nothing but hope. Here’s the thing though…Dara has been given some extra challenges besides DS. He also has autism and his intellectual disability has been classified as ‘severe’. So it’s tricky developing new dreams. I wish I could. Right now I try to live in the moment. Dreaming can hurt a little. I wish Nella so much happiness and fulfilment. She is amazing, as are your other kids. Thank you for always finding the beauty in this journey.

Lovely dream for Nella! When our son, Luke was only 3 we bought property that had a little house on it. We renovated it and lived there while we built our house next door. We did this with the thought that Luke might live there one day.